It’s back!

FormerMember
FormerMember
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Spent 7 hours in A&E this morning with my husband as he has had delayed gastric emptying and vomiting at 13 months post Ivor-Lewis procedure. They did a CT. The gastric pull-up is all fine, but they found a 4cm tumour on his liver and a 3cm one on his spleen. Of course it’s the weekend, so we have to wait until Monday to speak to his surgeon. Stuck in limbo wanting to make a plan, speak to people about next steps and can’t. The tumours weren’t there on his scan in March so they must be fast growing. Anyone had to deal with liver mets? I would love an idea of your treatment plan. 

  • Hi JayStevie,

    That’s awful news to receive, and just when you must’ve felt that you had made it to the finish line. Hopefully you’ll get a new treatment plan in place soon. CB

  • Hi JsyStevie. Sending you my best wishes for tomorrow and hope you get some answers. The waiting is so hard. 
    Take care. Julie

  • Hi JayStevie,

    Hope your meeting today went okay and you have a plan for moving forward? Best wishes CB

  • FormerMember
    FormerMember in reply to Cool Blue

    I spoke to the team today. They have the scan from our local hospital and are going to discuss it at the MDT tomorrow. They are also going to do an endoscopy on Thursday and a PET scan Friday. Then discuss the findings again a week tomorrow. At least we don’t have to spend months having it looked at. They seem to be moving as fast as humanly possible so that’s a plus. Just can’t believe we are back on the treatment rollercoaster. 

  • Hi, 

    I'm so sorry that your family is back on this roller coaster. Hopefully they'll come back quickly with a treatment plan for your husband. 

    We're all thinking of you and sending positive vibes.

    Take care 

  • Hi Steph

    So sorry to hear your news, hopefully you will have a treatment plan soon.

    Stay positive 

    Angie xx

  • So very sorry to hear you're back on the appointment and treatment treadmill. What an awful shock that must have been. 

    Did your husband have post op FLOT and get the all clear? And what sort of post op follow-up care did he have? I'm just curious, as I'm 10 months post Ivor Lewis and am on a follow-up trial called SARONG. I've already had 3 scans after my op, and am due an endoscopy in October.

    I sincerely wish you all the best, and that any future treatment is successful. I can't imagine what you must be feeling having to face this again. Please let us know how you get on ((hug)) xx

  • FormerMember
    FormerMember in reply to NickyF

    Hi Nicky, 

    He had the usual FLOT(March), surgery(June), FLOT(September) sandwich. The margins weren't clear so in Dec/Jan he had 25 doses of chemo-raditaion on the upper join that wasn't clear. He had a CT scan in March which was all clear, no evidence of disease. Since March his new tumours have grown to 4cm and 3cm. The MDT discussed him today and because of the position of the tumours they are inoperable and they also can't do biopsies so they are offering chemo and immunotherapy (we knew genetically that if it did return this was an option). They have given a life expectancy of months, not years (6+ months) depending on the effectiveness of the treatments. 

  • So sorry to hear this. What awful news! When I was first diagnosed I attended a support group for people with oesophageal cancer and their carers (smartpatient.com) and there were some people living on immunotherapy.  They were very supportive and knowledgeable.  You might fund them helpful. They meet on zoom a couple of times a week.

    Take care. Sending you positive vibes that immunotherapy is positive. 

  • Oh no, I'm so very sorry to hear the MDT have told you this. What devastating news. I hope you can both have some quality of life in the coming months, despite the worst possible news, making memories and loving each other Heart I hope his treatment in the coming weeks iisn't too brutal. xxx